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Nestled inside the intensive care unit of Children’s Hospital, surrounded at all-hours by his parents, grandparents and medical staff, you’ll find the young Easton Friedel. His mother Danielle Friedel said he was born with a unique condition.

“Right when he came out, his nurses noticed he was missing skin from his knees to his ankles and his elbows down to his hands,” Friedel said. “The doctor came to look at him and didn't know really what it was."

Doctors diagnosed Easton with epidermolyosis bullosa. Friedel said any sort of friction can cause the skin to blister and come off.

The Friedels came to Cincinnati’s Children’s Hospital so their son could be treated by Dr. Anne Lucky, a pediatric dermatologist with experience dealing with the disease.

The Friedels focus on their son’s progress. They have welcomed distractions like Facebook support, gift deliveries from strangers and hand-made art from their other three sons at home.

"I don't know how we'd do it without everyone helping,” Friedel said.

Easton was fighting a blood infection that reached his heart. However his latest test results show that he is now testing negative for the infection. His parents said they don’t know when they’ll leave Cincinnati. They said they cling to days like Wednesday, when they can hold him.